Abstract

Family caregivers play a major role in maximizing the health and quality of life of more than 30 million individuals with acute and chronic illness. Patients depend on family caregivers for assistance with daily activities, managing complex care, navigating the health care system, and communicating with health care professionals. Physical, emotional and financial stress may increase caregiver vulnerability to injury and illness. Geographically distant family caregivers and health professionals in the role of family caregivers may suffer additional burdens. Physician recognition of the value of the caregiver role may contribute to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization. However, physicians may face ethical challenges in partnering with patients and family caregivers while preserving the primacy of the patient-physician relationship. The American College of Physicians in conjunction with ten other professional societies offers ethical guidance to physicians in developing mutually supportive patient–physician–caregiver relationships.

Gould DA. Family caregivers and the health care system. Findings from a National Survey. In: Levine C, Murray TH, eds. The Cultures of Caregiving. Conflict and Common Ground among Families, Health Professionals and Policy Makers. Baltimore: The Johns Hopkins University Press; 2004.

Gibson MJ, Houser AN. Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving. Washington: AARP Public Policy Institute; 2007.

Rabow MW, Hauser JW, Adams J. Supporting family caregivers at the end of life. “They don’t know what they don’t know”. JAMA. 2004;291:483–91.CrossRef

Cherlin E, Fried T, Prigerson HG, Schulman-Green D, Johnson-Hurzeler R, Bradley EH. Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said? J Palliat Med. 2005;8:1176–85.CrossRef

Crawley LM, Marshal PA, Koenig BA. Respecting cultural differences at the end of life. In: Snyder L, Quill T, eds. Physician’s Guide to End of Life Care. Philadelphia: American College of Physicians; 2001:35–55.

Bascom PB, Tolle SW. Care of the family when the patient is dying. West J Med. 1995;163:292–96.

Hebert RS, Dang Q, Schulz R. Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: Findings from the REACH study. J Palliat Med. 2006;9(3):683–93.CrossRef

Schulz R, Beach SR, Lind R, et al. Involvement in caregiving and adjustment to the death of a spouse. Findings from the Caregiver Health Effects Study. JAMA. 2001;285:3123–9.CrossRef

Cassarett D, Kutner JS, Abrahm J. Life after death: a practical approach to grief and bereavement. In: Snyder L, Quill T, eds. Physician’s Guide to End of Life Care. Philadelphia: American College of Physicians; 2001:178–93.